year in review

Ah, yes, the staple of blogs, newspapers and radio shows everywhere: the year in review post/article/show.

2011 was a pretty good year for me, overall, so it’s good to look back at where I was then before considering how I want to make 2012 even better.

january.

I had just restarted Enbrel and was starting to feel better after the horrible slow decline of 2010. I got a promotion at my job (wahoo!), and my new reporter started. I was feeling pretty optimistic that things would be awesome.

february.

I fought the winter blahs and got an IUD. I got mad at people’s assumptions. I fell back in love with journalism, despite its potentially negative impacts on my health.

march.

I went ice skating—and learned to accept my limitations.

april.

I started the Health Activist Writers Month Challenge. I participated in the Walk to Cure Psoriasis. I was named a top 40 arthritis blog!

may.

I was incredibly busy with work, as summer events started rolling in and school events kicked into high gear before the end of the year. The mister and I painted our living room a lovely, bright blue.

june.

I traveled up to Washington, D.C., to visit friends and—best of all—present in and soak up the National Psoriasis Foundation’s volunteer conference! The mister and I celebrated three years of marriage. I set up a Facebook page for the blog.

july.

I had a bit of a nasty flare. I sewed my first garment. I turned 27.

august.

I got sucked in to Dragon Age: Origins (for the first time, anyway). I felt pretty (when they turned out the lights).

september.

I remembered 9/11. I worked Invisible Illness Week.

october.

I looked back on seven years with psoriatic arthritis. I posted my measurements for World Arthritis Day. Halloween! Real Thanksgiving! The mister and I visited my folks at their new home for the first time.

november.

I wrote a letter to my 18-year-old self. I started and didn’t finish National Health Blog Posting Month. I cooked my first vegan Thanksgiving.

december.

I worked an insane amount of hours, dropped off the face of the earth blog-wise, celebrated Christmas, joined the Christmas choir at my church, drove up to visit my parents and so much more. It was an action-packed month.

Whew! What a year. Peace out, 2011. Here’s to hoping 2012 is even better.

rather burn out than fade away

So, I’ve been rather a bad blogger.

I wish I could say it was because I was out being too awesome—though that’s part of it.

Or that I was ill and just couldn’t blog—though I was for a bit (including a nasty bit of laryngitis, yuck.)

Honestly, though, it was mostly just burnout. I was really just over being positive, over being forthcoming and, most of all, over being sick. I’m not really sure why it hit me so hard or why it did right then, but I guess it was bound to happen eventually.

Being accepting, being positive all the time in the face of something that’s not going to get better and not going to go away, that’s really difficult. I had a pretty good run of it: working on 15 years with psoriasis and creeping toward a decade with psoriatic arthritis. For most of that time, I would say I had a damn good attitude. I took my pills on time. I did what I was supposed to do.

But, I’m still sick. And I think it just hit me hard all of a sudden that even though I’m doing all the right things, even though I’m doing everything I should, that’s no guarantee that I’ll feel good or even just OK on any given day. And that sucks, quite frankly. I wish it worked the way everyone says things should, that we would get out what we put into it. I wish it was fair. But it’s not. And I know that.

I just needed some time, I think, to wrap my head around that once more. I needed some time to be negative and to regroup.

What I’m trying to say is I’m done with that.

I’m back.

brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

always something there to remind me

It all started about seven years ago.

I had just gotten home from an amazing vacation in Bermuda visiting some friends. I was sitting in my first class at a new school when I got the first twinges of what I would eventually be told was psoriatic arthritis. The nearly yearlong wait from first symptom to first rheumatologist appointment was horrific; the only thing my regular doctor would give me while I waited was an old-school prescription NSAID—so I mainlined that and took far more than the recommended daily dose of Aleve.

It’s crazy to think that one thing changed my life so drastically. I’ve had flares and good periods, been on so many drugs and met a ton of awesome people, in real life (thanks National Psoriasis Foundation volunteer conference) and online (thanks, blogging). But I guess it hasn’t changed much at the same time. I’m doing well in the field of my choice—one that’s demanding and difficult for the healthy. I’m married. And I’m happy.

As I sit here, thinking about my life and enjoying my drink of the month (a Dogfish Head Punkin Ale, yum), I’d say I’m doing pretty well for myself, with or without chronic illness. That’s not to say life is perfect—I’ve still got more pain and inflammation than I’d like, and I’m still grappling with some potentially life-altering decisions. But overall, life is pretty good. And I’ll take that.

loving what you do

What a difference a year makes.

It amazes me to think that this time last year I was actively looking to leave journalism. I was desperately unhappy with my work situation and having to work insanely long production days  simply because of a lack of planning on my boss’ part. I’m convinced this was, in large part, responsible for the insane flare that eventually saw me back on Enbrel, methotrexate and Plaquenil, a therapy I’m still on to this day.

Now, I’m the boss. I am working more hours than I was at this time last year, but I love every one of them. I have discovered a knack for writing columns—thanks, I’m sure, to this blog, which has helped me develop a more conversational tone than is appropriate in the average news story. Even on the verge of crazy weeks, such as this—a back-to-school section, two weekly papers, a monthly paper, the start of football season and weekend events galore—I’m excited to be up to my elbows in what I do.

And though my psoriatic arthritis is not completely controlled and is not where I’d like it to be—and that pesky tendonitis in my left wrist still bugs me from time to time—I’m living well in spite of it. That’s not my goal; I’d love to be back in the remission I enjoyed after my first, long flare. But even if that’s not in the cards for me right now, I’m surviving, even thriving, where I am. And that’s enough.

brace for impact

Today was supposed to be a good day.

The weather’s nice. It’s Friday. I bought myself some sunflowers at the farmer’s market, and they’re making my little office cheerful and bright.

But then some jerk guy decided to back up into my car.

(OK. I have tried twice now to get WordPress to post the full version of this blog. Hopefully third time’s the charm.)

Luckily, no one was injured and the damage to my car is minor. Things could most certainly have been worse. But it’s brought something into my life that I just don’t need right now: more stress.

I can feel myself on the edge of a flare; I feel as though if I stray to far to the left or right, I’ll plunge on down into one. To prevent that, I’d been trying to take it easy and to really take care of myself: eight hours of sleep per night (that one can be tricky), full compliance on meds, gentle workouts, good food. But all the self-care in the world won’t prevent someone else from blundering in and making a mess. And that’s what this guy did when he hit me; of course, he’s making it worse by trying to come up with different scenarios of how this was my fault that he backed his car into mine, but that’s another story.

As always, I can’t control how other people act, but my actions are up to me. And so I’ll be taking it easy this weekend and hoping against hope that I can pull myself back from the edge of a flare. Fingers crossed.

time to end psoriasis

The United States Capitol in Washington, D.C.

Image via Wikipedia

Guys, the National Psoriasis Foundation’s National Volunteer Leadership Conference (if you follow me on Twitter and saw a lot of #psonvlc, that’s what it was referencing) was awesome—and a great excuse to take a few days off work and hang around Washington, D.C. I’ll write more about the trip itself—and its impact on me, health-wise—later.

The conference was really great; there was an exhibit hall with vendors and information, all kinds of breakout sessions on everything from raising awareness to raising money and—of course—the big event: Climb the Hill for a Cure day, when psoriasis advocates hit up their Congressional representatives for support of the Psoriasis аnd Psoriatic Arthritis Research, Cure, аnd Care Act of 2011. (I was unable to go to that, unfortunately, since Tuesdays are a big day in newspaper-land.)

The breakout sessions I attended were on raising awareness on social media and in the traditional media (I actually got to talk a bit about being a blogger and the editor of a newspaper, though the latter half on newspapers was more of a rant on what annoys me and leads me to not publish things in the paper), a round-table discussion with some of the other mentors in the One to One program and a presentation on the highlights of psoriasis research and drug development. If you guys want, I can post my part of the social media presentation here; I’m also trying to get a hold of the PowerPoints from some of the other presenters, since I’ve had requests from people who weren’t invited to the conference. If and when I get them, I’ll post ‘em here, too.

But one of the coolest parts of the conference was meeting so many amazing people, like Marie B and Kathryn and Chris, mum to Carly and Katelyn. It was so refreshing to be in a room with people who get it, who have gone through what I’ve dealt with because they have psoriasis or they have psoriatic arthritis—or they know and love and support someone who does. I left the conference feeling like anything was possible. Just a few days later, I’m struggling with putting that feeling into action, but if nothing else, I left feeling hopeful. And that’s a good start.

already pretty: body gratitude in the face of illness

I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.

Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).

But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.

Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.

But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.

#HAWMC day 28: not anymore

(I won’t lie—I really wanted to name this post “At Least I’m Not As Sad (As I Used To Be)” but I already did that. Damnit.)

(Also, incidentally, last poem of the Heath Activist Writer’s Month Challenge!)

Not anymore

I used to be carefree. But I’m
not anymore. I
used to be weak. But I’m not
anymore. I used to be aloof.
But I’m not anymore. I used
to be afraid of losing. But
I’m not anymore. I used to be
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(Now, I’ll leave you with fun.’s “At Least I’m Not As Sad (As I Used To Be)”. Because that song is awesome.)

#HAWMC day 26: totem

Hoaxed photo of the Loch Ness monster

Image via Wikipedia

I had a hard time coming up with a spirit or totem animal to describe my condition. I mulled it over all day, bringing up and discarding animal after animal. I was about to give up and just phone in something for my blog, when it hit me; it had been staring me in the face all along.

My spirit animal is definitely the Loch Ness Monster. (I know, right?)

Just like the good ol’ Nessie, psoriasis and psoriatic arthritis are kind of a mystery; people really aren’t sure what causes it, and there’s certainly no cure. The information floating around in people’s minds about it is hazy and fuzzy, like photographic evidence of the Monster. Some people don’t believe it’s real, just like some I’ve encountered with their kooky opinions on autoimmune arthritis.

My experience with psoriasis and psoriatic arthritis have been monstrous at times, too; the flares, the embarrassment, the pain, the oddity of having arthritis at 20. And the worst part: Never knowing when I’m going to flare, when I’m going to feel bad and when I’m going to feel good—or at least better.

I kind of like the idea of equating my diseases to an animal, especially a potentially fictional one. (Just kidding—Nessie is totally real.) It’s certainly got the potential of making me smile when I’m feeling especially crappy—and that’s definitely something I can use in my arsenal.